I hate my life. Actually I hate Josh's mother. I feel like I have been working on trying to get some kind of recognition for my stupid brain tumor foundation for years now and now that the baby is goingto be born she doesn't want us there with TLC to see us "Bring Home Baby".
"If you were to pick your mother's worse nightmare this is it." I understand that all people don't like to be on TV but I feel like I have been busting my ass and the one thing that I feel could make a huge difference in acceptance, Etc. of my condition is contigent on Josh's mother, which it's not.
"What do you want me to do? Pull a place to live out of my ass?"
"YES." Asshole. Quit playing with your dick so much and do something. I almost had a heart attack last night because he placed my book in In-Design so we can get it that one step closer to being published.
I feel like I have busted my ass to get my life in "order" and I was feeling somewhat in love with myself just 2 or 3 days ago thinking I was a cool chick again and now my carefully balanced house of cards is asunder.
I don't think I should be a mother. I'm really freaking out. I want my mommy. One day I feel on top of the world and the next day I wish I were dead. Yesterday when I started going through all the emotions of Dr. Shah telling me I had to wait another 2 months for the baby to come I flipped way the fuck out. I'm already having problems losing sensation in my hands. My spine hurts so bad I don't get out of bed. The doctor keeps checking to make sure my feet aren't swollen and you have to get out of bed in order for that to happen.
I'm pissed too. When I interviewed Dr. Shah I asked him if he would take him early. I don't want to think about what's going to happen to me if I keep him in there too long, which seems to elude everyone. If I keep him in there longer how much more damamge will be done to my spine? I spoke to one lady today that had two kids after her syringo diagnosis but she doesn't have arachnoiditis either and I was like... well... I guess I can't compare myself to other people anymore. She was on neurontin, elavil and vicodin throughout her entire pregnancy.
I am talking with the makers are the Duragesic patch. Unfortunately it goes through the milk but I am going to breast feed for a couple of months anyway.
Oh fuck I hate waking up with my eyes all swollen from crying. I woke up this morning with a charlie horse and Kaite called me about the same time.
I haven't been writing as much as I wish I could. I keep losing senation in my hands. Everyone says it's ok and acts like I am not going paralyzed and everyone is delusional and fucked up.
I am starting to feel the confining pressure of parenthood and I can't say that I care for it too much. I dig Josh's dad... I don't know how he can put up with his mom but he's a sweet guy.
Thursday May 12, 2005
I smoked some opium this morning. I feel better than I have in months.
What makes me mad when I talk to stupid assholes now is that they have no regaurd for my health. It's all about hte baby. There is but one thing this little fucker has taught me. He has the will to live and no matter what happens to me he will keep on living. He is healthier than me. He is starting off life in a compromising position with all the narcs but he will manage.
I, on the other hand, am dying at a more accelerated rate and I can feel this process happen a lot faster the bigger I get. It's amazing how weight really fucks your spine up. I will never be fat again. It's amazing what a gluten free diet can do.
Kathi called me today. They naturally fucked up the teflon in her tummy.
Saturday May 15, 2005
I had a panic attack last Tuesday. Not a pretty one. I haven't felt that shitty in a long time. I started freaking out about dying. How I am getting worse, feeling like this is such a mistake and my body is so fucked up and I just keep making it worse. I keep thinking how I am not going to get to carry him around because my arms are going to quit working. I worry that he can feel what’s going on with my body, which made me want to cry. Rita said she read an article from NPR about how the kids of 9/11 moms had problems with cortisol and I am deficient so I think it makes a difference.
Q. Can our baby feel pain or become emotionally upset in the womb?
Medical specialists and psychologists never thought this would be possible even for a newborn baby, but research now confirms that even babies born very prematurely express a gamut of emotions, and, without doubt, can experience excruciating pain. Ultrasound observations of behavior in utero, especially among twins, reveal a spectrum of emotions including anger, fear, and affection. Babies appear to react to needles that intrude into the womb with a mixture of shock, withdrawal, and aggression. Studies of pregnant mothers watching upsetting videos suggest that babies can become upset along with their mothers. Several studies have revealed that babies tend to become depressed when their pregnant mothers are depressed, an effect which begins in the womb and has been measured after birth.
We are watching TLC right now about this dude cut his arm off. The worst part is now... listening to him cut the nerve. "I knew it was going to hurt and it was like fire."
Last week I got so scared.
I made Dr. Irma cry. All these bad emotions and feelings I’ve been hiding just boiled to the top.
Friday night I was so happy. I made my famous mashed potatoes, fried chicken and corn. I haven't cooked like that in so long... and I paid. I paid dearly.
I took a bath after I was done and fell into bed with Buzzy (she tries to come over every Friday night so we can bond. We watch movies and talk about our week and sometimes she tells me a story of growing up on Haight Ashbury dancing to the Doors and all the greatest sex, drugs and rock and roll stories). Josh will blow up the mattress and sleep on it while we zonk out and I was down for an hour before I woke up almost screaming.
My shoulders were on fire. I went to a 10 on the pain scale and that's when it's too hard to cry. My face goes pale and my lips lose their color. My eyes go to half-mast. It hurts to touch my skin. I jumped in the bathtub and cranked the hot water. I do a few other things to get the pain to subside that I cannot write about. Josh thinks my epidural has worn off. My leg is starting to electrocute me again. My shoulders are stiff. I can't lift a fucking pot without it hurting. My legs quit working when I start to fall asleep... I can't feel them.
I got in my car Tuesday night and ran away. I drove around the city trying to sort through these feelings. I don't want to die; I think that's why I fight so hard to live. It made me think that I am living to die and my son is dying to live. I get more tragically sad. The 101 to the 110 to the 10 to the 405. I called Zorba to get him to hold me while I cry this shit out. He eventually calls me back when I am so exhausted and almost home again. I almost went to Olga's but she had just finished a final and I couldn't wrap myself around dumping on someone like that.
I sat down at Dr. Irma's and we started talking. It took me a long time before I really started talking about how tragically broken hearted I felt. It just poured out and she held back her tears. If my feelings are so horrible that I can make a trained professional cry I knew Josh couldn't take it Tuesday night when I lost it and he wanted to talk it through.
"I didn't know you went to a therapist" Olga told me on Friday when she took me to have a massage at Burke Williams in We Ho.
“Ever since the diagnoses.” I got a complimentary milk bath and saw all kinds of naked women that I would never see. As a photographer I love to study bodies so everyone fascinates me. My girlfriends are the best girlfriends anyone could ask for. I love Olga and Buzzy.
The night before was no picnic, Thursday. We were invited over to a friend's place for dinner where Josh made dinner. The guy we saw was amazing. He had testicular cancer so he was sympathetic. His wife was not so kind and neither was her best friend.
Why is it that no one will ever say anything to someone that is annexoric but if you are pregnant and you have a beer after having a particularly stressful week you are a horrible person?
I felt like I was going through the goddamn Spanish inquisition. "Do you exercise?"
"Yeah... having sex with Josh."
"Do you think it's a good idea to be drinking a beer with all the drugs you are on?" It's already gone. I am so hurt and angry. These assholes don't live my life. They don't even know me and they feel comfortable enough to tell ME HOW TO LIVE MY LIFE?
If the baby doesn't have a mommy to take care of him I am positive he is going to be way more miserable then if I drink one beer so I can relax after going through a suicidal roller coaster of emotions. He hid for 2 days and I didn't look pregnant. I understand that healthy people go through this but I also know that my mom was completely healthy (she didn't drink ever, never smoked blah blah blah) and I was born with birth defects. .
I'm fucking sick and tired of being judged.
I cancelled my baby shower. I am not going out unless I absolutely have to. I stay in bed all the time so I won't hurt. If I am lucky I can swim. If I am even luckier I might have sex.
I can't be around other people right now. After going through the inquisition I got over being suicidal so much thinking "If assholes like this can breathe then so can I."
Besides it makes me laugh to chase Josh around squirting "mommy juice" from my engorged breasts. My left breast is much larger.
My OB also told me that he was going to deliver at 37 weeks. When I originally interviewed him he told me that he wanted to deliver him at 32-34 weeks. I freaked out. If I am having paralysis episodes, more electrocution, vision shifting, painful nights so bad I wish I were dead and many other things NOW and I am 27 weeks then in 10 more weeks I will be insane with pain. I see how this is affecting me now and how all I can do it lie in bed and if I am hurting my child being in my bed and suffering then he would be happier being out of my body. I was happy once he was 25 weeks because I know they have delivered them that early.
Everyone is so worried about him. He’s healthier than I was when I was born. If mommy isn’t here to take care of him then what? I am sure he will be much more miserable.
I’m tired. I hope that things will be ok. Hope for the best but expect the worst?
I never want to have another week like it was last week. I don’t want to feel my hormones dip and I don’t want to talk to any more jerks that don’t understand one thing about my situation and don’t understand that without me this child can not survive right now and I am doing my best to survive with him.
I explained it to Heather like someone is taking an ice pick and sticking it up my spine hitting it will a ball pin hammer while the jaws of life are opening my back rib cage. I feel the cyst in my spine coming down and choking me behind my throat. My hands are going numb and stay that way from several minutes to hours. I magnify the bad things and can’t concentrate on the good. I forget things and it scares me.
I wish there were an easy solution. I know that opium addicts used to give birth. I know heroin addicts give birth as do coke addicts. I don’t appreciate being stuck in the same category as they are. I don’t like it that people make judgments on me when the only people that can understand what’s going on are people that have these fucking nightmare diseases and I couldn’t find another woman that had Syringo, an AC, an extensive “demyelinating” disease, Fibromyalgia, Depression, degenerative disc disease on a few discs, herniated disks (Schmorl's node defects) primary empty sella syndrome, hypopituitarism (I’m low in cortisol which: Corticotrophin Deficiency: Corticotrophin deficiency leads to an under active adrenal gland (Addison's disease (see Adrenal Gland Disorders: Addison's Disease)), which results in fatigue, low blood pressure, low levels of sugar in the blood, and low tolerance for stress. This is the most serious pituitary hormone deficiency; if the body is unable to make any corticotrophin, it can be fatal), scoliosis, a “benign” intraosseous lipoma (bone tumor), a disc bulge with a paracentral annular tear (when the wall tears, the gel bulges into the fissure and the disc may bulge or protrude into the spinal canal) a stretched white mater diseased medulla oblongata, that was prego taking duragesic, on steroids, etc and living in debilitating pain. I have to write the manual on that one and it royally blows. Shit it’s even worse looking at this again and again.
I don’t know how I live.
Wednesday May 18, 2005
My shoulders are burning. My brain is fried. I’m sick of thinking about shit that doesn’t matter.
“If you ever feel like you never made a difference you are wrong. You have changed the life of my little girl.”
“I just pray she never has the things I do.” And I do.
I’m wiped out. My spine hurts worse than anything. Dr. Caton says they are muscle spasms or it didn’t feel like muscle spasms but it’s the inside that hurts. The pulling on my spine. The way the extensive white mater disease has stretched to accommodate him. That’s having those calcifications that are already hardened and stretching them feels oh so good since they are dead already.
My hands are numb already. It’s time for my nap. The baby is kicking like crazy. I need to see Dr. Geller soon.
I wish I lived in outer space so I couldn’t feel gravity.
Thursday May 19, 2005
2 mg of diluaded later…
I was in so much pain. I woke up screaming, the baby is pulling on my spine, which hurts too much. I won’t go into details but it gets so bad sometimes I have to go to the ER and get a shot.
I felt the muscles in my arms then my face and then the rest of my body melt into nothingness. All the tightness in my shoulders disappears and I looked at my poor, exhausted Tink (waking up at 5 am is not a good thing) and said, “You are in trouble…”
You’re in trouble usually signifies that I am going to be down for some hardcore dirty sex. Today was no exception. When I feel healthy (I wish I felt as good as I looked but at least someone told me recently they would rather be hot and ill than the other way around) I feel like such a kitten.
When I feel like this I feel so amazingly sensual.
We got home and I ripped off my clothes and jumped into bed as Tink stripped off his shirt. “Damn, baby, I’ve never seen you move so fast!”
“That’s because I want you in me now.” He comes over and takes off my shoes as my bare naked tanned ass is sticking up at him. I go outside sometimes to soak up the sun. Actually this is what I do all the time these days. Sit next to the Jacuzzi and worship the sun. It feels so delicious rubbing up against my skin.
He gets on top of me and we passionately kiss as if we were teenagers examining the other sex’s body for the first time. I think my favorite thing about Tink is ever time feels like the first time. I stare at the planes that make up the shape of his face as he kisses me. “You need to wash your cock if you want me to suck on it.” He’s in the bathroom before me before I realize it. I run in to take a wizz as I always hate starting wondering if a little urine didn’t get mixed up with girl cum.
I went to the GYN on Monday and that was the last time we had sex. Tink stayed home because he wasn’t feeling good so he stayed home and made love and lay in bed all day. Before my appointment we washed away all the yeasty goodness so when he looked there was no beastie yeasties (I know you guys love this talk but just get over it. Accept a woman’s body for all her natural functions and you will be a happier man. I finally figured out why some men just suck and that’s because they don’t all love women. Tink loves my body so much and has made me feel so beautiful being pregnant that I feel more sexual about myself more each day. Besides some men don’t understand that a woman’s vagina gets really fucking tight as the baby gets bigger).
So we make it back to the bed. Once you have the beasties it’s hard to get rid of them when you have the sexual appetite of a bunny on steroids and the ability to feel orgasms like earthquakes.
